Faculty of Health Sciences, University of Sydney, Lidcombe, New South Wales, Australia.
J Intellect Disabil Res. 2013 Oct;57(10):980-92. doi: 10.1111/j.1365-2788.2012.01593.x. Epub 2012 Sep 14.
The aim of this study was to explore the way in which community living staff engaged with people with intellectual disability (ID) about dying and death.
Guided by grounded theory methodology, focus groups and individual interviews were conducted with staff who had either no experience with client death, experience of a client sudden death, or a client death experience which was pre-dated by a period of end-of-life care.
While in principle, staff unanimously supported the belief that people with ID should know about dying, there was limited in-practice engagement with clients about the topic. Engagement varied according to staff experience, client capacity to understand and the nature of the 'opportunity' to engage. Four 'opportunities' were identified: 'when family die', 'incidental opportunities', 'when clients live with someone who is dying' and 'when a client is dying'. Despite limited engagement by staff, people with ID are regularly exposed to dying and death.
People with ID have a fundamental right to know about dying and death. Sophisticated staff skills are required to ensure that people with ID can meaningfully engage with end-of-life issues as opportunities arise.
本研究旨在探讨社区生活工作人员与智障人士（ID）谈论死亡的方式。
本研究采用扎根理论方法，对没有客户死亡经验、有客户突然死亡经验或客户死亡前有临终关怀经验的工作人员进行了焦点小组和个人访谈。
尽管原则上，工作人员一致支持 ID 人士应该了解死亡的信念，但实际上与客户在该主题上的参与有限。参与度根据工作人员的经验、客户的理解能力以及参与的“机会”性质而有所不同。确定了四个“机会”：“当家人去世时”、“偶然的机会”、“当客户与临终者同住时”和“当客户即将去世时”。尽管工作人员的参与有限，但 ID 人士经常接触到死亡。
ID 人士有了解死亡的基本权利。需要有高超的员工技能，以确保 ID 人士能够在机会出现时有意义地参与临终问题。
